Fatores que Influenciam a Autogestão nos Adolescentes com
Diabetes Tipo 1: Uma Revisão Scoping
Factors Influencing the Development of Self-Management on
Adolescents with Diabetes Type 1: A Scoping Review
Inês Carnall Figueiredo
Mestranda em Ciências de Enfermagem, UCIP/UCIN, Hospital Professor Doutor Fernando da Fonseca
Isabel Malheiro
Professora Adjunta, PhD, Escola Superior de Enfermagem de Lisboa
Maria José Góis Paixão
Professora Adjunta, MSc, Escola Superior de Enfermagem de Lisboa
Odete Lemos
e
Sousa
Professora Adjunta, MSc, Escola Superior de Enfermagem de Lisboa
Background: There are 303 new known cases of children and adolescents (0-19) with type 1 diabetes
in Portugal, only in the year 2014, and more than 79000 new cases worldwide in 2013. The incidence of this
chronic condition is rising, and the technological and medical advances in the last years allow for the well-being
of individuals who, in other conditions, would not have survived. Health interventions directed to the adolescent
with type 1 diabetes aim to motivate and facilitate self -management transition from caregiver to self, having
the specificity of the adolescents in mind. The caregiver plays an essential role in this transition. His control
and support should not end abruptly at the beginning of the adolescence, but slowly become an orientation
that respects the young person’s autonomy. Type 1 diabetes has always been a widely studied subject, and the
interventions directed specifically to the adolescence period are one of the focus on recent papers.
Methodology: This scoping review was carried out according to of the Joanna Briggs Institute Reviewers’
Manual (2015). Initial search, including JBI Database of Systematic Reviews and Implementation Reports,
CINAHL and MEDLINE, revealed there is not a scoping or a systematic review (published or in progress) about
this subject. The objective of this review is to identify and map the knowledge about the self-management
development process in adolescents with type 1 diabetes. It takes into account the perspectives of adolescents
(aged 10-18) with type 1 diabetes and their parents/caregivers. It also includes the perspectives of health
professionals and young adults (aged 18-25) with type 1 diabetes, where the participants are considered experts
in their chronic condition.
Results: Six main categories of factors considered as barriers or facilitators in the development process of
self-management in adolescents with type 1 diabetes could be found: Adolescent Self; Family; School; Peers;
Health Care and type 1 diabetes evolution/Health regimen. Interventions can be adopted by health professionals
in order to surpass identified challenges to self -management. Further investigation is needed on the matter, and
focus groups are recommended for adolescents, caregivers and young adults regarding this theme.
Palavras-chave: adolescente; jovem adulto; autogestão; autocuidado, diabetes tipo 1.
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Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
Background: O número de novos casos de Diabetes tipo 1 (DM1) em crianças e
adolescentes em Portugal foi de 303 no ano de 2014, e os números a nível mundial no ano
de 2013 ascendem a mais de 79000 novos casos. A incidência desta doen crónica está a
aumentar e o desenvolvimento médico e tecnológico dos últimos anos tem contribuido para a
sobrevivência e o bem-estar dos indivíduos. As intervenções de saúde dirigidas aos adolescentes
com DM1 pretendem motivar e facilitar a transição da gestão da DM1 dos cuidadores para
o próprio adolescente, considerando as especificidades próprias desta população jovem. O
cuidador tem um papel fundamental nesta transição, já que o seu controlo e suporte não
podem ser abruptamente retirados no início da adolescência, mas evoluir suavemente para
uma orientação respeitadora da autonomia da emergência da pessoa jovem. A DM1 tem sido
um assunto largamente estudado e as intervenções dirigidas para o período da adolescência
são um dos focos de estidos recentes.
Methodology: Esta revisão scoping utilizou as orientações do Joanna Briggs Institute
Reviewers’ Manua (2015). A pesquisa inicial, incluindo o JBI Database of Systematic Reviews
and Implementation Reports e as bases de dados da saúde CINAHL e MEDLINE, revelaram
não haver registo de revisões scoping ou sistemáticas, publicadas ou em desenvolvimento,
sobre este assunto. O objetivo desta revisão é identificar e mapear o conhecimento sobre
o processo de desenvolvimento da autogestão da DM1 em adolescentes, considerando as
perspetivas quer dos adolescentes (10-18 anos) quer dos seus pais/cuidadores. Inclui ainda
as perspetivas dos profissionais de saúde e de jovens adultos (18 - 25 anos) sempre que estes
foram considerados peridos nesta condição crónica.
Results: Encontraram-se seis categorias principais que podem ser facilitadoras ou
colocar barreiras ao processo de desenvolvimento da autogestão da DM1 em adolescentes:
Self; Família; Escola; Pares; Cuidados de saúde; e Evolução da DM1. Foram identificadas
intervenções que podem ser adoptadas pelos profissionais de saúde para ultrapassar os
desafios colocados à autogestão. É necessária a realização de mais estudos de investigação
nesta área e o método de focus groups é recomendado para a colheita de dados sobre esta
temática em adolescentes, prestadores de cuidados e jovens adultos.
Keywords: adolescent; young adult; self-management; self-care; type 1 diabetes.
BACKGROUND
There are 303 new known cases of children and adolescents (0-19) with type 1
diabetes mellitus (DM1) in Portugal only in the year 2014, and more than 79000 new
cases worldwide in 2013 (Sociedade Portuguesa de Diabetologia, 2015). The incidence
of this chronic condition is rising (Sociedade Portuguesa de Diabetologia, 2015), and the
technological and medical advances in the last years allow for the well-being of individuals
who, in other conditions, would not have survived. Diabetes is the fourth most prevailing
chronic condition in adolescence (Barros, 2003).
DM1, also known as “insulin-dependent diabetes”, is usually diagnosed during
childhood or youth. In this type of diabetes, pancreas β-cells are destroyed and no longer
produce insulin. The etiology of this chronic condition is yet unknown, however, it is
believed to be an auto-immune process (Associação Protectora dos Diabéticos de Portugal,
2004). Only approximately 3% of people diagnosed with diabetes have DM1 (Record &
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Ballard, 2013).
As a chronic condition, it cannot be cured, relying on treatment adhesion and
suited management to ensure survival and strengthen quality of life (Barros, 2003). An
inappropriate management of DM1 can, in short term, lead to serious and even lifethreatening situations. The hypoglycemia is one of the most common examples of such
situations, and diabetic ketoacidosis is also potentially fatal, requesting immediate hospital
care (Record & Ballard, 2013). These negative consequences may imply the need of
hospitalization and/or invasive treatment, which most of the times translates into distress,
suffering/pain and anguish of the adolescent and family.
Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
Long term consequences of poor metabolic control can lead to other health
conditions, such as nephropathy (which can lead to chronic renal failure), arterial
hypertension, neuropathy (with serious consequences like diabetic foot on adulthood),
retinopathy, among others (Couto & Camarneiro, 2002).
These may imply the need of frequent hospitalizations, dialysis, dealing with pain,
missed school days, among many other factors that influence negatively the quality of life
of these individuals, interfering with their education and social development (Kollar, 2013).
The consequences of a poor metabolic control in adolescence have also consequences in
future adult life (Docherty, Barfield, Thaxton, & Brandon, 2013).
The family is also affected, and although the pursue of the family’s optimal
adjustment to the child/adolescent’s chronic disorder is one of the objectives of health
interventions, it is a difficult equilibrium to achieve (Docherty et al., 2013).
More so, the money spent on treatments associated with long term consequences
of an inappropriate diabetes management is an important slice of the Portuguese National
Health Service budget (Sociedade Portuguesa de Diabetologia, 2015). Alas, we can say
that a good management of DM1 is not only favorable for the individual, but also for the
Health Service, predicting future lower costs, since it can prevent secondary conditions,
decrease emergency services recurrence and days of hospitalization, among others (Lorig
et al., 2001).
Adolescence is a life stage, a period of transition between childhood and adulthood.
Although the boundaries of adolescence differ from individual to individual, its beginning
can be identified by the onset of puberty, and the end with the completion of body
growth. It can be hard to find an agreement between authors about a specific age interval,
however, adolescence can be defined as from 10 to 18 years of age, including all its subphases: early adolescence, middle adolescence and late adolescence (Kollar, 2013; World
Health Organization, 2014).
Psychosocial theory identifies the crisis of group Identity versus alienation as
characteristic from this period. The adolescent looks for a framework of values and
behaviors inside his group of peers, the approval from the peers, the autonomy from the
family, and the search of a sense of personal identity (Erikson, 1976).
According to Piaget, it's also during adolescence that the individual acquires an
abstract thinking ability, which means he can understand the consequences of his actions,
without having to live them (Kollar, 2013). Simultaneously, it is said that the adolescent
lives the present as his only moment of existence, not valuing or projecting his own self
into the future (Cordeiro, 2009). Adolescents can solve complex problems, but their
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Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
thoughts can also be immature (Papalia, Olds, & Feldman, 2001).
There is some consensus when it comes to assume that adolescence tends to be the
most difficult period when it comes to living with a chronic condition, since adolescents are
identified as a vulnerable group, where “being different” usually isn’t something positive.
It is a life period known for its’ progressive autonomy from parental/adult care, a process
that can be hard and disrupted, considering restrictions and mandatory medical care
imposed by DM1 (Barros, 2003). In addition, puberty implies a decreased sensitivity to
insulin (Hockenberry, Baker, & Mondozzi, 2013), making it harder to achieve an adequate
metabolic control.
Since a chronic poor metabolic control in adolescence predicts poor metabolic
control in adulthood (Ellis et al., 2005), we can assume an intervention in developing selfmanagement in adolescence as a short, medium and long term investment.
According to Barlow, Wright, Sheasby, Turner and Hainsworth, optimal selfmanagement of a chronic condition implies the own use of cognitive, behavioral and
emotional strategies, allowing a quality of life that suits the individual (Malheiro, 2015).
So, “self-management” implies that the own individual will be responsible for his daily care
and management of his condition (Lorig & Holman, 2003). Six skills have been identified
by these authors for an efficient self-management: Formation of a patient-provider
partnership; resource utilization; problem solving; decision making; action planning; and
self-tailoring (Lorig & Holman, 2003).
Health interventions directed to the adolescent with DM1 aim to motivate and
facilitate self-management transition from caregiver to self, having the specificity of the
adolescence in mind. The caregiver plays an essential role in this transition. His control
and support should not end abruptly in the early adolescence, but slowly become an
orientation that respects the young person’s autonomy (Barros, 2003).
The DM1 has always been a widely studied subject, and the interventions directed
specifically to the adolescence period are one of the focus on recent papers. However, an
initial search including JBI Database of Systematic Reviews and implementation Reports,
CINAHL, and MEDLINE revealed there is not a scoping review or a systematic review
(published or in progress) about this subject.
The practical implication of this mapping will be to identify the self-management
process influencing factors. Without this identification, it is not possible to develop and
implement an effective educational self-management program specific to adolescents with
DM1.
This scoping review followed the JBI methodology guidelines, which suggests
identification of the research objective/questions, the inclusion criteria, search strategy
and some specificities of extraction and presentation of the results (Joanna Briggs Institute,
2015).
OBJECTIVES/QUESTIONS
The objective of this review is to identify and map the literature about the selfmanagement development process in adolescents with DM1. The review will
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focus specifically on the following questions:
What factors positively influence the self-management development process of
adolescents with DM1?
What factors negatively influence the self-management development process of
adolescents with DM1?
INCLUSION CRITERIA
Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
Participants
This scoping review considered all studies that focus on adolescents (aged 10-18)
with DM1 and their parents/caregivers. Studies where the adolescents were part of a
larger sample of patients with DM1, but it was possible to accurately identify data that is
from adolescents separately, were also included.
Studies with young adults (aged 18-25) with DM1, where the participants,
considered experts in their condition, reported factors that influenced the development of
self-management skills, were included.
Studies with health professionals and parents/caregivers of adolescents with DM1
on self-management development process were included.
Concept
This scoping review considered all research studies that addressed the selfmanagement process of adolescents with DM1, namely:
Practices or interventions used to promote self-management on adolescents with
DM1;
Young adult and adolescents’ experiences about the self-management competences
development;
Healthcare providers’ experiences with adolescents with DM1 during the selfmanagement competences development.
Context
This scoping review considered studies where influencing factors (such as barriers or
facilitating factors) of the self-management process of DM1 in adolescence were reported.
Types of studies
This scoping review case studies
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Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
METHODS
Search strategy
This review used a three-step strategy, as recommended by the Joanna Briggs
Institute for all types of reviews (Joanna Briggs Institute, 2015). The search was limited
to the last 5 years, from 2011 to 2016, and accepted documents published in English,
Portuguese, Spanish and French. The searched databases for published documents were
CINAHL, MEDLINE, JBI, COCHRANE Database of systematic reviews; ERIC and MEDLATINA.
The first step used MEDLINE complete and CINAHL complete through the Ebsco
Platform, with preliminary keywords drawn from the natural language terms about the
subject, namely, self-management process; self-care process; autonomy; independence;
treatment adherence; diabetes type 1; adolescent; young adults; teenager; barriers;
facilitating factors; influencing factors; adherence. Relevant studies were identified and
text words in the title and the abstract were hilighted as well as the identification of the
index terms used by databases to describe the articles.
The second step used the following boolean search expression adapted for each of
the databases :
((Adolescen* OR Teen* OR Young adult) AND (Diabetes type 1 OR Diabetes Mellitus
type 1)) AND (Self-management OR Self-care OR Autonomy OR Treatment adherence OR
adherence) AND (Barriers OR Facilitating factors OR Influencing factors OR Difficulties OR
Risk Factors OR Motivators OR Obstacles OR Challenges)
For the final step, references from retrieved articles were searched for additional
studies. The overall steps are depicted in PRISMA fow diagram presented in Figure 1.
Figure 1 - PRISMA Flow Diagram for identification, screening, elegibility and inclusion of studies
Fonte: Moher, Tetzlaff, and Altman (2009).
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Data extraction
Data from included studies were extracted by two reviwers using a template
developed for the purpose, including details about the interventions, populations, study
methods and outcomes of significance to the review question and specific objectives.
RESULTS
Most of studies included in this scoping review were conducted in the USA 2,5,6
,8,10,11,12,13,14,16,17,18,19,20,21,24,26,27 , UK 4,9,22,23, Taiwan 3, Norway 15 and
Sweden25 in table 1.
ID
1
2
Author
Year
Country
Neylon; O.; et. el. 1
2013
Mulvaney, S. A.; et.al. 2 2011
Austrália
USA
Chen, C.; et.al. 3
Spencer, .J; et. al..4
Taiwan
UK
Study Design
Participants
Lu Y,; et.al. 5
2015
Palladino, D.K. and Hel- 2013
geson, V.S.6
USA
USA
Eilander, A. ; et.al. 7
Datye K.A.; et. al..8
2016
Netherland
Systematic Review
Randomized controlled pilot
trial
Cross-sectional
Interpretive phenomenological
Quantitative
Mixed , qualitative with interviews and quantitative
with a questionnaire (likert)
Quantitative
2016
USA
Literature review article
2015
Céspedes-Knadle,
M.and
Muñoz,.E.10
2011
UK
Literature review article
USA
Adolescents (one group of girls )
Naranjo, D.; et.al. 11
Tse, J.; et.al. 12
Holmes, C.S.; et.al.13
Cox, D. et al.14
USA
USA
USA
USA
282 (8-18 years)
2017
2013
Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
41 (13-17 years)
265 (10-19 years)
20 ( 13-16 years)
54 (13-18 years)
48 adolescent (13-16 years) /
parent dyads and 21 pediatric
endocrinologists
598 (8-15 years)
Cox, L.and Hunt, J.9
Frøisland, H; Årsand 2015
E. 15
Kornides, L. et al.16
2003
Mulvaney, A. et al.17
2011
Norway
Qualitative approach, descriptive
Literature review article
Cross-sectional
Randomized Control Trial
Development and validation
of a Problem Recognition in
Illness Self-management
Qualitative
USA
Cross-sectional
USA
Babler, E. and Stri- 2015
ckland, J.18
Seiffge-Krenke, I.; et 2013
al.19
Mlynarczyk, M.20
2013
Rechenberg, K.; et 2016
al.21
Edwards D; et al.22
2014
USA
Development and validation 123 (12-17years)
barriers to diabetes adherence measure for adolescents
Grounded Theory
15 (11-15 years)
Freeborn, D.; et. al..23
UK
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2014
2012
2015
2014
2012
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151(13 -18years)
226 (11-14years)
425(13-18years)
DM1/parents
12 (13-19 years)
USA
Quantitative,
descriptive 109(12 -16years)
and correlational
USA
USA
Cross-sectional quantitative. 102 (12-18years)
Quatitative cross-sectional
320 (10-18years)
UK
Mixed-Method Systematic
Review
Qualitative descriptive
16 (6-18 years)
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adolescents
57
Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
Berlin KS; et. al. 24
2014
USA
Hanas, R.;et. al..25
2011
Mulvaney, S. A. et al.26 2011
Sweden
USA
Mulvaney, A.; et.al.27
USA
2012
Qantitative descriptive and 142(10-18 years)
correlational
Literature Review article
Quantitative, development 123 (12-17years)
and initial validation of an
instument
Quantitative, experimental 28 (13-17years)
RCT
The 27 articles found were read and analyzed, opinions and experiences of
adolescents, young adults, caregivers and healthcare professionals were considered on the
matter of the factors that influence the development of self-management in adolescents
with DM1, including health practices, interventions and contexts.
From the articles collected, a pattern seems to appear, revealing several factors that
influence this process. They can be divided into 6 main categories: Adolescent Self; Family;
School; Peers; Health Care and DM1 evolution / Health regimen.
Adolescent Self
Every individual is a complex being, influenced by many factors, intrinsic and
extrinsic. Several articles found in this Scoping Review point to personal characteristics as
being predictors of a good or poor self-management of DM1. In fact, adolescents point
their own personal qualities as their best resource for solving diabetes related problems
(Mulvaney, Rothman, et al., 2011).
There are findings that relate the adolescent’s not fully developed discipline,
knowledge of DM1 and cognitive skills with a poor self-care behavior, when there is a
higher emotional detachment from parents (Chen et al., 2016).
Several other individual factors pose as barriers or facilitators in the development
of self-management competences, such as Psychological and Spiritual Factors (Chen et
al., 2016; Lu et al., 2015; Mulvaney, Rothman, et al., 2011; Spencer, Cooper, & Milton,
2014); Self-Concept (Husted et al., 2014; Palladino & Helgeson, 2013) and Self-efficacy
(Husted et al., 2014; Kristensen, Thastum, Mose, & Birkebaek, 2012), the idea being
that if the adolescent believes that he is capable of a specific behavior, its fulfillment
is more likely (Eilander, De Wit, Rotteveel, & Snoek, 2016). It was also found that some
associated conditions may challenge even more the acquisition of self-management skills,
Depression/depressive symptoms being the most mentioned (Chen et al., 2016; L. Cox &
Hunt, 2015; Datye, Moore, Russell, & Jaser, 2016). Depression is proposed to reduce social
motivation and consequentially, the individual’s ability to engage in optimal diabetes care
(Céspedes-Knadle & Muñoz, 2011). However, a study describes that depressive symptoms
are negatively correlated with life satisfaction but positively correlated with HbA1c levels
(Chen et al., 2016) and contribute to a poorer self-management (Naranjo, Mulvaney,
McGrath, Garnero, & Hood, 2014).
Disordered Eating Behaviors are also described as a challenge when it comes to a
healthy management of DM1, posing as a predictive factor for lower diabetes adherence,
less frequent blood glucose monitoring and higher HbA1c (Tse, Nansel, Haynie, Mehta,
& Laffel, 2012). Insulin omission is also reported by Hanlan et al. (2013) as a way of
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manifestation of eating disorders (one of the consequences of these omissions is weight
loss). They also found that individuals with DM1 are more likely to suffer from Disordered
Eating Behaviors than their peers, evidencing the need of screening directed for such
disorders.
Knowledge and Understanding of the Disease plays an essential role on selfmanagement, as it is referred in several articles retrieved. Being recommended reeducation
of youth after diagnosis in a routinely manner, it seems that this domain is sometimes
neglected (Holmes, Chen, Mackey, Grey, & Streisand, 2014). This is also a factor identified
in the development of a survey tool to identify diabetes self-management barriers (Cox et
al., 2014).
Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
As such, interventions that focus the development of knowledge and understanding
of the disease, such as Education Sessions, in some stances, seem to have a positive impact
on glycemic control and on treatment adherence (Holmes et al., 2014). However, Christie
et al. (2014) found no effect on HbA1c on their intervention, that consisted on a two 1-day
workshops that taught intervention delivery, but found only approximately half of the
recruited families attended at least one module, and that young people with higher HbA1c
levels were less likely to attend (Spencer et al., 2014). Education Sessions are not the only
intervention capable of increasing understanding and knowledge of the disease. A MobilePhone-Based intervention that focused on promoting self-management competences,
found that the adolescents reported a better understanding of the relation between
administered insulin, carbohydrates and blood glucose levels after its use, improving selfmanagement behaviors and consequently, metabolic control (Froisland & Arsand, 2015).
A crucial matter when it comes to self-management is the individuals’ motivation.
Motivation can be increased or diminished according to environmental factors. For
instance, young people described felling motivated after education sessions, but also
stated that they lost that motivation not after long (Spencer et al., 2014).
Gaining attention recently, has been Motivational interviewing/Self-determination
programs, where is sought to empower the individual to make positive health life choices,
motivating for self-management behaviors. Although this is an intervention being explored
nowadays, data results are not consistent, not showing dependable results on improved
metabolic control (Datye et al., 2016; Husted et al., 2014).
Mobile and Web-based interventions have been gaining some attention in recent
years, associated with technological advances in general. A pilot trial of a web-based
diabetes messaging system for adolescents was tested, intending to motivate and remind
adolescents about self-management of DM1, with positive effects in maintaining HbA1c
(Mulvaney, Anders, Smith, Pittel, & Johnson, 2012). However, long-term efficacy of textmessaging interventions is still yet to prove (Datye et al., 2016). Another selected article
takes advantage of new technologies to adopt an internet self-management problem
solving program, a low cost implementation program, that proved that barriers to selfmanagement can be addressed through technology (Mulvaney, Rothman, et al., 2011).
The adopted interventions to improve self-management and adherence directed
to adolescents are many and varied, as described previously, but it was found that
multicomponent interventions had a larger effect (Datye et al., 2016; Naranjo et al.,
2014). Exemplifying one of such multicomponent interventions, the development and
implementation of a group intervention called Teen Power was found. It aimed to an
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Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
increased diabetes knowledge, personal motivation and social support, designed to:
“improve medical adherence in teens with DM1 by promoting psychosocial adjustment,
eliminating psychological barriers associated with poor diabetes management, and
reducing diabetes specific stress in caregivers” (Céspedes-Knadle & Muñoz, 2011).
Family
Most of the articles mentioned the importance of the family in the development of
DM1 self-management in the adolescence period.
Parental support is an important factor to take into consideration in this process
(Babler & Strickland, 2015; Christie et al., 2014; E. D. Cox et al., 2014; L. Cox & Hunt,
2015; Datye et al., 2016; Holmes et al., 2014; Husted, Thorsteinsson, Esbensen, Hommel,
& Zoffmann, 2011; Kornides et al., 2014; Kristensen et al., 2012; Mulvaney, Rothman, et
al., 2011; Mulvaney, Hood, et al., 2011; Seiffge-Krenke, Laursen, Dickson, & Hartl, 2013;
Spencer et al., 2014). The selected articles that approach this theme, point to the parents
as caregivers, essential to a healthy transition of management of DM1. In fact, adolescents
point their parents as one of their best resources for solving diabetes related problems
(Mulvaney, Rothman, et al., 2011).
Family conflict is a predictor for poor-self-management and poor glycemic control
(Naranjo et al., 2014). However, several conditions are predictors of a good self-management
development. They include: parents being prepared to transfer responsibility; adolescent
having developed skills to assume self-care; older age from the adolescent and when
the adolescents are emotionally ready to do so (Babler & Strickland, 2015). According to
Mlynarczyk (2013), supportive parents aim to limit the adolescents’ exposure to risks and
to encourage protective factors, and states that the perception of this parenting style is
related to better adherence/self-management, even if it does not reflect on metabolic
control.
It is important to bear in mind that parent supervision and support should not be
overprotective or highly restrictive, or their role could be perceived as intrusive instead
of collaborative and cause the adolescent with DM1 to struggle to assume management
(Babler & Strickland, 2015; Datye et al., 2016; Husted et al., 2011; Seiffge-Krenke et al.,
2013).
It also transpires that the lack or absence of parental supervision during adolescence
period is likely to lead to a poor self-management. One article even shares an adolescent’s
testimony where he states that he could cope with his DM1 for a period of time by himself,
but not full time (Spencer et al., 2014). The insufficient parental assistance can lead to the
adolescent experiencing burnout, feeling DM1 as a burden they could not control or deal
with, making its management difficult and frustrating (Babler & Strickland, 2015).
Family meal habits have also been described to influence DM1 management. It was
found that adolescents belonging to families with Regular Family Meal Habits not only had
a better quality diet, but it also was a predictor for better adherence and management
(Kornides et al., 2014). Parents establishment of this practice has been described as an
adaptation strategy to support their child, integrating healthy eating habits into a family
routine (Spencer et al., 2014).
Even though it is only mentioned in one article, we find it important to refer Siblings,
sometimes viewed by the adolescent with DM1 as an extra support, mainly when parents
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are not available to do so, working as a “safety net”, providing a sense of security when
parents are absent (Spencer et al., 2014).
It was also found a strong relation between parents’ high income and education
status, with a better self-management and problem-solving skills. Lower socioeconomic
status is associated with higher HbA1c (Chen et al., 2016; Neylon, O’Connell, Skinner, &
Cameron, 2013). Adolescents from moderate-income families were as challenged with
DM1 as those from low-income families (Rechenberg, Whittemore, Grey, & Jaser, 2016).
Taking into account the parents’ essential role in this management transition from
caregivers to self, it is of no surprise that interventions were found focusing not only the
adolescents with DM1, but also their home environment and family. A Randomized Control
Trial was conducted with adolescent/parent dyads, where four joint appointments were
scheduled throughout a year, conducted in a clinical context. There was a Coping versus
an Education comparison group, and it was found that both programs had a positive
impact on preventing deterioration in diabetes management, but the Education group
was found to perform better than the Coping group on study outcomes, particularly in
terms of improving HbA1c (Holmes et al., 2014). On another study, Christie (2014) and
her colleagues found that their structured educational and motivation program did not
decrease HbA1c at 12 or 24 months. A Randomized Controlled Intervention study, where
both adolescents and parents participated in the Guided Self-Determination-Young
method along their routine clinic appointments, also didn’t show differences in HbA1c, but
it significantly increased motivation for self-management (Husted et al., 2014).
Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
School
Since a big part of the adolescents’ time is spent on school, this is also a context
pointed as an influencer on the development of self-management (Edwards, Noyes, Lowes,
Haf Spencer, & Gregory, 2014; Spencer et al., 2014; Wang, Brown, & Horner, 2013). The
adolescent generally requires less and less assistance to fulfil the needed procedures and
choices for self-management (Edwards et al., 2014). An important responsibility befalls
the school in establishing an environment that promotes the self-management of these
adolescents, simultaneously assuming a caregiver role.
There are documented strategies adopted by the school that allow the adolescent to
manage this chronic condition with better results (e.g. free passes for cutting the cafeteria
queue if they needed to eat urgently, being able to leave the classroom on request to
check glycaemia, or disseminate information amongst the teachers about the identity
of the student with DM1 (Spencer et al., 2014)). It can be argued that different criteria
in relation to other classmates can bring the adolescent with DM1 the sense of “feeling
different” (Freeborn, Dyches, Roper, & Mandleco, 2013), and some option to avoided these
advantages in order to “feel normal” (Wang et al., 2013).
However, some negative and harmful approaches and decisions from school
personnel regarding DM1 are referred by adolescents, influencing their management at
school (Edwards et al., 2014; Wang et al., 2013). Not taking into consideration some special
needs can be frustrating for the adolescent, and even dangerous in some cases (such as
hypoglycaemia). Students also report that in some schools, they are not allowed to check
blood glucose in the classroom, or that there is a lack of a private location to do so, which
can affect their choices in terms of self-management (Edwards et al., 2014).
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Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
An intervention in particular is documented that is directed to school personnel that
deals with adolescents with DM1, with the objective of enabling them to supervise and
help adolescents with DM1 (Edwards et al., 2014).
Peers
Peers play an essential role on the adolescent’s development, this being the period
when their opinion is generally most valued by the individual. Their support or non-support
can play an important role on the development of self-management of the adolescent
with DM1 (L. Cox & Hunt, 2015; Spencer et al., 2014). However, it is also found that peers
have a more important role as emotional supporters of these adolescents than on selfmanagement or metabolic control (Datye et al., 2016).
It was also found that conflict with peers has a stronger effect on diabetes outcomes
that their support (Palladino & Helgeson, 2013). As such, social context will pose as a
barrier in an easier way than as a facilitating factor for self-management.
Several adolescents “feel different” from their peers and friends (even if a distinction
is made regarding friends and peers, being the latest more prone to be seen as having a
negative perception by the adolescent (Berlin, Hains, Kamody, Kichler, & Davies, 2015)),
a subject already brought up in this review when talking about adopted strategies by the
school to facilitate DM1 management. This sentiment is also reported by some individuals
when they need to measure their blood glucose, administer insulin or when they have a
symptomatic hypoglycemia (Spencer et al., 2014). The feeling of being stigmatized or the
fear of it happening is described by some of the adolescents with DM1 (Mulvaney, Hood,
et al., 2011; Wang et al., 2013). This could act as a barrier to self-management in presence
of peers (such as in school) (Edwards et al., 2014; Freeborn et al., 2013; Wang et al., 2013),
which leads us to another point: disclosure of DM1.
Non-disclosure can lead to potentially dangerous situations, such as severe
hypoglycemia, where loss of consciousness implies the need of help from others that
know what is happening and what to do (Spencer et al., 2014; Wang et al., 2013). Even so,
some adolescents choose not to disclose their DM1, in hopes that peers don’t treat them
differently (Lu et al., 2015). Some adolescents adopt a strategy to avoid such a situation, by
telling one or two close friends about their chronic condition and educating them on how
to act in emergency situations related to DM1, such as a severe hypoglycemia (Edwards et
al., 2014).
Contact with peers with the same diagnostic of DM1 as proved to be beneficial to
the adolescent, improving their adherence and knowledge (Céspedes-Knadle & Muñoz,
2011). A study even found that it’s participants would be exited as they shared similar
experiences and shared strategies to deal with challenges they faced (Freeborn et al.,
2013). As such, peers as mentors is an intervention to be taken into account, as a way to
facilitate learning and sharing essential DM1 management skills and experiences that the
mentor has already developed (Freeborn et al., 2013; Lu et al., 2015).
Health Care
The health care can be perceived by the individual with DM1 as a safe place
where they can expose their doubts, fears, difficulties and needs related to their chronic
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condition. It can also be perceived as a connection point of their life with diabetes,
which can become a symbol of unwelcome attention. The representation assumed in the
adolescent’s mind is determined by many factors. The healthcare team’s approach on the
subject can be essential on this matter. In fact, one of the influences on self-management
of the adolescent with DM1 is the relation with the Healthcare Team. Testimonies from
adolescents point their positive perception of diabetes clinic, referring friendly treatment
and interest in their lives aside from diabetes (promoting a feeling of normalization),
enabling health care professionals to develop a relationship of trust (Spencer et al., 2014).
Communication between the adolescent/family and the healthcare team should
be fluid and perceptive, in order to allow information sharing. Communication problems
can pose as a barrier in getting information, making it an aspect to take into consideration
when in clinical context. Listen to patients, spending enough time with patients and
explaining concepts appropriately are some aspects to pay attention to (Datye et al., 2016).
Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
Cost of care is also mentioned, stating it as a barrier, either relating to distance
needed to travel to have access to health care, insurance or finances (Datye et al., 2016;
Naranjo et al., 2014). This was not clearly found in other studies, whether if for need of
further investigation on the subject or because other countries developed costs support in
such situations, this scoping review could not assess.
An interesting approach to diabetes clinic attendance is documented as “Care
Ambassadors”, consisting of non-medical personnel that monitored and helped to
schedule appointments and track hospitalizations and emergency room visits, resulting in
a significant improved attendance to clinic visits (Datye et al., 2016). This intervention also
reduced hypoglycemia and emergency room visits, but no effect was proved on HbA1c.
DM1 Evolution / Health regimen
Important factors influencing self-management development process through
adolescence in individuals with DM1 has to do with the evolution of their chronic condition
and the adopted health regimen. It can be discussed that longer duration of diabetes can
relate to higher levels of burnout related to treatment, translated into a bigger probability
of difficulties with self-management (Naranjo et al., 2014), but Chen et al. (2016) found no
significant correlation with duration of diabetes and self-care behaviors.
Regimen pain/bother and burden is widely reported as a barrier to adherence to
treatment. Adolescents’ reports could be found referring to pain and bother of glucose
blood checking and administration of insulin, as the procedures interfered with their
school or extra-curricular activities (Freeborn et al., 2013; Spencer et al., 2014). Believing
diabetes is a burden is not uncommon during adolescence. It can lead to an improper
management of this chronic condition, with behaviors of not checking blood glucose
levels or lying about them, acting lazy, omitting insulin doses or needing a break (Babler
& Strickland, 2015). Burnout is referred as an important barrier to treatment adherence
(Mulvaney, Hood, et al., 2011).
The health regimen is often demanding in terms of time management and planning,
being identified by adolescents as one of the main issues when it comes to adopt selfmanagement behaviors (Mulvaney, Rothman, et al., 2011).
Insulin administration is several times described as painful, being one of the reasons
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Factors
Influencing the
Development of
Self-Management
on Adolescents
with Diabetes
Type 1: A Scoping
Review
described for insulin omission. There are several ways to administer subcutaneous insulin,
and a study from 2011 compares discreet devices such as insulin pens with conventional
syringe-based regimens, both in terms of pain, ease and accuracy, and states that
the first is significantly easier, more accurate and less conspicuous, making the latter
method of administration obsolete and in disuse (Hanas, de Beaufort, Hoey, & Anderson,
2011; Mulvaney, Hood, et al., 2011). Research also shows that the use of continuous
subcutaneous insulin therapy (also known as insulin pump) tends to improve glycemic
control and self-management (Naranjo et al., 2014).
Implications for Research
This scoping review intends to be a contribution to the research conducted on the
field of empowerment of the adolescent with DM1, and as such, will benefit from further
investigation.
We also understand the importance of experiences and opinions of health
professionals and parents/caregivers in relation to self-management development process
of adolescents with DM1, and suggest that a Focus Group should be conveyed with such
a sample as well.
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